Saturday, February 15, 2020

Preparing to apply for disability online: tips to make it easier and quicker for you



When I applied for disability 3 years ago I was not expecting to be approved on the first try, within 3 months.  I had always heard that when you're young (30's are considered in young in the land of Social Security), and have a college degree, that you are almost certain to be denied at least once.  

This prevented me from even applying for years.  I wanted to share what I did do that helped me, that I hope will not only encourage you that it is possible to apply and be approved, but that it isn't as challenging as it may seem, IF you are prepared.  

I'm gonna share with you tips that I learned along the way and tips that made it easier for me.  This is by no means a guarantee, just my own experience.  

1. )Disability binder: for me, I used a regular 3 ring binder and separated each category of records by dividers.  

    *Provider tab: you'll need all the clinical notes from all treating physicians ESPECIALLY from the last 6 months.  List any doctors, hospitals, clinics, therapists, or ER's you've visited because of your condition. 
                             -you'll need their contact information: easiest way is to just keep their business cards together because you'll need: address, phone number, fax number
                              -you'll need dates, the date of your first apt, last apt, next scheduled apt.  This is where cards could come in handy too. And the treatment that was suggested at each appointment or visit. 

      *Diagnoses:   diagnosing physician, I use a separate tab for each diagnosis.  The more detail the better.  

       *Prescriptions: current medications, doses, prescribing information, why you take it, and side effects.  Any allergic reactions you've had as well.  Pharmacy print outs may helpful if they're needing to confirm you've tried a certain medication in the past.
       
      *Imaging: for the purposes of the application the radiology reports and clinical notes are what you need most as opposed to the actual imaging disc.  So, make sure to have any radiology reports and any clinical notes pertaining to any MRI's, X-RAY's, CT scans, Ultrasounds,etc in this tab. 

      *Tests & Procedures: ex: colonoscopies, EKG, biopsies, stress test, tilt table test, lab work, any and all tests.  
-You're going to need who ordered the test
-the results of the test and any treatments suggested from the test.  
-Information for where the test was performed, i.e. address, phone number, fax and of course dates

       *Employment Information: up to 5 that you've had in the last 15 years.  You need the date you became unable to work because of your condition.  You'll need your job title, type of business, dates of employment, hours per day, hours per week, & rate of pay.  
       -you'll need the past 15 years of pay stubs(if you have them), W-2 forms, &/or self employment tax returns for past year.  Employer name, address, phone number, supervisor name.  
       -amount of earnings for this year and last.  
      - be prepared to be very descriptive about your job duties, everything you were responsible for, any and all physical activity.  This section requires a lot of information
       
     *in this section I also include education information such as job training, trade school, vocational school, &/or college degree.  You'll need addresses and phone numbers for each of those as well 

       *Financial Information: you'll need your routing number, & bank account number for direct deposit since that is how they send pay.  Have taxes and pay stubs ready. 

        *Symptom log: you can find free printable charts online.  You'll need the onset, what makes your symptoms worse, & better.  What you do for relief, what triggers your symptoms.  Circumstances which symptoms began and date of onset.  It's all about proving objectively, your symptoms. 

       *Surgeries:  both inpatient and outpatient.  Where the surgery was performed, date, surgeon and ordering physician if different, and the outcome.  You'll also need the operative report, and any clinical notes directly pertaining to surgery and outcome.  

        *Hospitalizations: each ocurence, what it was for, how long you were there and the outcome.  You'll need the names and addresses of hospitals as well as the treating/admitting physicians.  Also, the admission date and discharge date.  
        

                               2.) If I were to do it all over again I would not use an advocacy firm.  I had a terrible experience and it delayed my application and approval by 2 years because I trusted them to apply for me (that was what they do, gather all your records and apply for you and all you have to do is sign off...supposedly) and they did not... I know, that was a bit naive of me.  It wasn't until I took matters into my own hands and applied that I was approved. 

3.) Apply online yourself, then consult with a disability attorney IF you are denied for help with the appeal.  I had consulted with an attorney and even though I applied myself, I still had to cut them 10% of my back pay even though it was me who did the work.  So, take it from me, wait to use the attorney until you need help with an appeal because I spoke with 4 different attorneys and all wanted me to apply myself first.  They have very helpful information online from disability attorneys for free!

4. ) You don't have to gather all your records, or make a disability binder, or any of this . Social Security will do this for you.  HOWEVER, if you go ahead and do this, it will make it easier for them, and therefore QUICKER for you.  If time is a factor and you need to be approved or get your decision ASAP this will speed up the process.  

5.) keep track of everything you've tried, all of it.  Acupuncture, dry needling, cupping, holistic medicine, chiropractic, ALL OF IT.  If you are anything like me and tried everything under the sun, you might even add a Treatments, or Alternative Treatments to your disability binder and gather those records.  

I know it can seem daunting and overwhelming especially when you're so sick or in so much pain you can't work.  If you choose to go this route, my suggestion is don't try to do it all yourself.  Have someone help you gather your records. See how many of your Dr's will mail you your records or email them.  For me, I had my PCP request my records and that made all the difference in the world.  If you take anything away from this, I hope you feel a little less overwhelmed at the idea of applying for disability and a little more hopeful.  Best of luck to you, you got this! 

Jenny

you can apply online here

for a list of all the documents you'll need click here



Thursday, September 19, 2019

What you don't see


Me at my last pain management Dr apt.  My pain was at a 10




 In honor of pain awareness month and suicide prevention month, I want to talk about what you don't see from those in your life living in chronic and intractable pain. 
My family are the only one's who get to really see my pain.  I only share photos of myself on the good days.  Am I prideful? Yes!  But mostly I just don't want to bring others down by sharing my misery.  I don't like to talk about pain.  It takes so much from my life in the first place, I don't want to give it any more attention or energy.  But, I felt compelled since it's pain awareness month to share my heart on this subject. 

Me on a very severe pain day

 Pain is invisble and subjective.  It is not only difficult to explain but hard to quantify.  The pain scale helps us a lot to be able to gauge where we're at.  But given how subjective pain is, not everyone's "10" is the same. 
What about the days when we're out looking "normal" but gritting our teeth through levels of pain that would land normal people without pain in the ER?  And why is this even important to talk about?  I feel it's important because 100 million plus people suffer with chronic pain & a subset of that population suffer with intractable severe pain, ".
     "Intactable pain is described as “pain that is excruciating, constant, incurable, and of such severity that it dominates virtually every conscious moment, produces mental and physical debilitation and may produce a desire to commit suicide for the sole purpose of stopping the pain.” In the authors’ clinical experience, bonafide IP patients suffer profusely and are fundamentally bed- or house-bound in the absence of intense medical management."https://www.practicalpainmanagement.com/resources/intractable-pain
 I live with Intractable pain. 



  Someone you know likely suffers in chronic pain and I have lost count of the people I know that say at least someone in their life either doesn't believe their pain is that severe or they don't understand.  It strains relationships to the point that many lose those relationships.  I know people who hide it altogether because of the stigma associated, so they suffer in silence. 




Which leads me to my next point, life is not meant to be lived alone.  People need people.  When relationships are strained the risk of loss and therefore isolation increases exponentially.  With pain being so common this really is something that should be discussed because there is such a stigma associated with chronic pain.  Most people who've never experienced long term pain don't understand the concept of how if affects your life living day in pain day out, or even just on a regular basis.  It makes it really hard to understand what you can't relate to.  I get it, even as a RN and before my pain journey even began I couldn't fathom having to live in pain that didn't relent.  It broke my heart for those people, but since I didn't understand it, what more could I do?



What I've learned from living in constant, daily pain for 10 years is that it is so important to try to help our loved ones understand our struggles.  Just like that saying, "everyone is fighting a battle you can't see,"  pain is one of those for many people.  Just as communication is crucial to the health of relationships, understanding someone else's experience is just as important in my opinion.  I am blessed to have an amazing husband who supports me and loves me regardless of the limits pain has on me. He is my rock and tries hard to understand. I'm blessed to have children who are compassionate and understand my limitations. I'm so grateful for the support of other family members.  I'm blessed to have friends that try hard to understand, and have stuck it out with me despite how I may not be the most fun friend since this is a part of my life 24/7.  Having said that, I have experienced difficulties like anyone else living in chronic pain has.  I have been blessed in the sense not many people openly doubt me or suggest that my pain isn't real.  There have been very few actually that have suggested that, but I realize that was out of complete ignorance and I really do forgive them.  Have I lost friends and some family members, yes.  But what I've gained is substantially better & I have support.  Unfortunately, for many others, they are not so lucky.  They've lost spouses, family members, and friends and that shatters my heart to pieces.  I realize not everyone is as lucky as I am so that is my heart behind sharing this with you.  



None of us who live in pain asked for it.  And I've yet to meet someone who would choose this lot in life.  Are there people who make up pain to get pain pills  yes, but they are fewer than what is being reported.  Are there people who make it up for sympathy or exaggerate?  I'm sure there are, but I've yet to meet one.  And it is really difficult to get good pain management anymore, you have to provide imaging and all sorts of documentation that your pain is real, which is good in my opinion.  Though I realize it hasn't always been this way.  It is now.  At least in the state and states of friends I know living with pain and they are spread all over the country.  





So why do I share all this.  What is my point?  What you see is usually me made me up and smiling.  That is not the regular and I feel like it's being disingenuous of me to not share that what it takes to get me to be able to get to those points is a whole production in itself.   I have to plan to rest up for said event, often times I've got to shower one day and wash my hair the next, and usually style my hair the next day.  A lot of resting in between has to happen.  I have to time the medication just right and because of the current climate I don't get the amount of medication that keeps my pain levels managed.  Therefore I have to try and plan around after I've taken my meds and be done before they wear off.  There is a ton of spacing out activities so I can get it done.  Do I have to wear makeup, no but I do that to feel somewhat normal and like "me".
My Mom took this picture of me waiting for my Dr, my pain was a "10"
What you don't see is my Mom driving me every couple months to my pain management Dr where I pee in a cup to prove I'm taking my meds as prescribed and try my hardest to explain to him my pain levels. What used to be a "10" (natural childbirth), is now something I live with regularly.  My pain stays at a 
"8", but reaches a 10 more than I thought possible. And there's absolutely nothing that can be done that I'm not already doing.  

You may see me wearing makeup and looking somewhat put together.  But what you don't see is that 90% of the time I'm doing really good to bathe and change my clothes.  I slap some make up on to try to hide that pain and cheer myself up.  If I allowed myself to look the way I feel all the time it would bring me down.  This is a means of self care for me. It's worth the price I pay to feel somewhat "normal" even if only temporarily.



What you don't see is that there is no more house cleaning days.  I do what I can which isn't much and my kids and husband have to help with the rest (which I hate btw...so much guilt).  I used to have a day every week where I deep cleaned.  I prided myself on the fact that you could eat off the floor.  No more of that... What you don't see is the only meals I can cook for my family is a meal I can dump in the crockpot.  And it is challenging to find meals that will taste good and are somewhat healthy.  Thank you cream of chicken soup!  There's nothing wrong with that, it's just I used to love making my family healthy meals.  I used to love spending hours planning and prepping.  I know, weird.. I used to love working out, I'm talking for hours.  I LOVED IT.  Not just doing stretches in my bed.  I used to love taking my kids on dates and going out with my husband.  I used to love getting together with girlfriends & visiting family. I used to love serving sex trafficking survivors and serving at church.  I LOVED, LOVED LOVED my  job as a nurse. It is my passion. These things happen very rarely now.  And not one day goes by that I don't pray God heals me so I can go back to work, back to living, that I can live life the way I long to so I can be there to the fullest for the people I love.  I maintain my licensure in the hopes that I will be healed enough to the point I can go back  to work. My dream is to finish my Masters.  Daily I pray for that and all the aforementioned to be restored.  What you don't see is that pain has taken so much from me that I refuse to give it any more attention.  It's like the criminal who stole someone I love and I grieve for the life I had.  I don't want it getting any more of my life. I won't give it anymore attention.   



But what I will do is share what you don't see in hopes that maybe it'll help someone else see all the things it steals.  All the ways it affects the lives of those you know, just in case you're having a hard time understanding.  There's no shame in that by the way.  I can't imagine understanding it either if I didn't live it or live with someone who did!!  I do hope my tone comes across as helpful and not critical, my heart is to help spread awareness.  Those of us in the pain community are already suffering and we need all the awareness & support we can get.  That's why I share.  Nearly every day, someone new in the pain community is contemplating taking their life, ending their suffering.  They're tired, tired of living a life they didn't ask for and being judged for it.  Tired of not being able to go to the Dr and get the medication they need to have any quality of life.  If you only knew some of these stories... it would surely break your heart.  And this is me being very real, but I have been where they are.  My family and faith saw me through the darkest days of my entire life where I chose to stay because I had too much to lose.  But I totally understand those that are too tired to fight anymore.  It's a fight that feels at times pointless. "Since there are 41,149 suicides every year in the U.S., according to the National Center for Health Statistics,  it’s possible that many of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps as many 20,000 or more Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year."https://www.psychologytoday.com/us/blog/nation-in-pain/201511/chronic-pain-and-the-risk-suicide

“Approximately one-third to three-quarters of people with chronic pain experience moderate to severe depression. Patients with depression experience increased pain because of overlap in the two affected systems: pain reception and mood regulation. Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.”5https://www.ableto.com/resources/why-chronic-pain-causes-fatigue-and-depression/
  
We need your support and understanding or willingness to understand now more than ever!!  So my main reason is sharing for those lives that are suffering with little to no support.  Because every life is precious, right? 



If you read all of this I thank you from the bottom of my heart.  Truly.  I know this isn't a comfortable subject and life has enough ups and downs without adding anymore voluntarily.  So truly, thank you.  Just know that I appreciate you more than you'll probably ever know.  Here are some suggestions on how to help if someone you love lives in pain. 


Friday, August 2, 2019

Living with Chronic migraine





I have been living with migraines for over 20 years now. Up until I was hit head on by a man who ran a red light they were only occasional and were managed with Excedrin Migraine or the occasional Relpax.  After that, they began to increase in both severity and frequency and became chronic (15 or more a month) and have stayed chronic and daily at times for 16 years. 

Because 1 in 10 suffer from migraines, 3.3 million with chronic migraines & since I've tried everything (from natural remedies to surgery), I wanted to share my experience with the treatments I've tried in hopes of helping someone else who is suffering &/ or trying to decide what option is best for your treatment. 

Of course I'm not a Dr, so that decision is up to you and your physician.  But maybe you'll get some insight into what you feel may be worth considering.  

Total I have been under the care of 7 different Neurologists.  Four of which were headache specialists, and the rest were very experienced in treating migraines.  

It all started with my diagnosis at the age of 18.  I didn't want to have to take any prescriptions so I took the natural route.  I tried every supplement under the sun, chiropractic, acupuncture, acupressure, headache diaries, eliminating foods and other known triggers. But they only continued to get worse.  

Below is the entirety of all I've tried and whether or not they helped me. Since everyone is different and what works for one may not work for others, I'm not saying any of these things are good or bad.  Just sharing my own personal response to these interventions. 

I first started with natural measures, or treatments that did not involve prescriptions.  I was hopeful at that time that I could possibly get these monsters in check the natural way, and some of these things did and do still help me. Unfortunately none of them have completely taken migraines away for me. 

ALTERNATIVE/NATURAL/HERB/SUPPLEMENTS:

-Chiropractic: NO
-Acupressure: NO
-Acupuncture:NO
-Hydration: YES
-Caffeine in moderation: YES
-Sleep: YES
-Rest & Relax: YES
-Elimination diets: YES
-Migralief: SOME
-Migrafew: SOME
-Magnesium: NO
-Counseling: HELPED TO COPE
-Exercise: NO
-Yoga:NO
-Daith piercing:NO
-Massage: YES
-Headache hat: YES (https://amzn.to/2YHq59o)
-Eye mask/Dark: YES
-Noise cancelling headphones/Quiet: YES
-Essential oils: SOME (https://amzn.to/2YIbDy9)
-Fish oil: NO
-Hormones: YES
-Breast implant removal: NO
-Elimination diet based off my known sensitivities: YES
-Keto diet: NO
-Butterbur: NO
-Vitamin B2: NO
-Co-Enzyme Q10: NO
-Feverfew: NO
-Melatonin: 3mg a night: NO
-Fish oil: NO
-B complex: NO
-Alpha Lipoic Acid: NO


*Next were the introduction of the medications.  This included prophylactics, abortives, anti-emetics, & pain relief

Medications:

PROPHYLACTICS:

 -Birth ControlNO
 -TopamaxSOME (but because of kidney stones, not an option for me)
- Amitryptyline: NO
Nortriptyline: NO
Propranolol: NO
Gabapentin: NO 
Cymbalta NO
Lyrica: YES (couldn't stay on due to side effects)
Namenda: YES
Cymbalta:NO
Gabapentin: NO
Lisinopril: NO
Propranolol: NO
Verampamil: NO
Periactin: NO
Doxepin:NO
Effexor: NO
Migrelief: SOME https://amzn.to/2Kbc286
Migravent: SOME https://amzn.to/2yALvu9
Migraine Stop: SOME https://amzn.to/2YEnFMF

ABORTIVES/ RELIEF
-Tylenol: NO
-NSAIDS:NO
-Excedrin Migraine: YES
-Relpax: YES
-Frova: YES
-Maxalt: YES
-Zomig: YES
-Cambia: YES
-Midrin: YES
-Imitrex: oral and injection form: NO
-Treximet: SOME
-Naratriptan: CARDIAC SIDE EFFECTS
-Migranol: NO
-Midrin: YES
-Stadol nasal spray =YES but too many side effects
-Fiorcet: YES
-Morphine:SOME
-Nucynta: SOME
-Oxycodone: YES
-Oxycontin: YES
-Fentanyl: YES
-Norco: YES
-Demerol: YES
-Percocet:YES
-Tramadol: NO
-Tizanidine: YES
-Baclofen: NO
-Meloxican: YES 
-Zomig: YES
-Phenergran: YES
-Compazine: NO
-Flexeril: NO
-Vistaril: NO
-Benadryl: SOME


Blocks were the next step.  
My neurologist at that time, tried many different types.  He suggested that I need to go off all medications.  He thought I had rebound headache from medication.  I did that for several months as suggested.  Unfortunately, all that did was keep me in constant,unrelieved pain. My kids were toddlers and I was working full time so it was not a good time to say the least.  



CERVICAL SPINE BLOCK


C




Next up was treating my TMJ/TMD to see how much of that was contributing to my migraines... I had a custom made oral appliance that I was to wear at night due to my grinding and in the daytime during activities where I was prone to clenching.  I also had a therapy called vapocoolant spray and stretch to try and reduce trigger points in my right Sternocleidomastoid and Trapezius muscles.  I still wear a mouthpiece and have since found a much more affordable option for a professionally made mouthguard that I have had better results and is 1/4 of what I paid for the first one!  You can find it here https://amzn.to/2YEdFiL

 Around this time, I sought out the help of a Neurologist at a headache clinic out of state for patient trial that was to hopefully bring out the next state of the art treatment. Unfortunately because of my other health issues I was not a candidate. Thankfully though, this is when Botox came on the scene.  I had to travel out of state to find a Dr who was performing these injections.  Of course that didn't matter one bit. The first round was great! I got relief!  Unfortunately all subsequent rounds thereafter were not helpful... 


So next came more meds for the next 2 years.  That's when a cutting edge surgery became available for intractable chronic migraines.  The neurostimulator became available for severe headache conditions.  I underwent the trial which was positive and was approved for permanent implant! I had my first neurostimulator placed in 2013.  It was like a miracle!  I was able to return to work & lead a somewhat normal life. I was getting REAL relief.  It didn't take away all my symptoms, but it enabled me to have a quality of life I had been missing for so long. Unfortunately though the leads migrated after about 6 months and even after complete revision it never helped again despite several attempts at reprogramming.  My Dr's didn't know why it just stopped working.  But there is some speculation that the nerves become tolerant of the stimulation and don't receive the same amount of relief they once did. 
When I had my trial, which is done externally that was the most relief I had the whole process.  As time went on the relief stopped and then actually began making my symptoms worse so I turned it off and still haven't turned it back on.  I plan on having it removed when my conditions steady out a bit.

Neurologist #6 tried more Botox in 2015 and when that failed he told me there was nothing more could be done and my next hope was CGRP monoclonal antibodies. But they were to be at least 3 years away.  I was so discouraged.  If not for a good pain management regimen I'd have been in excruciating pain 24/7.

I did find a procedure called SPG block that was supposed to be life changing. For me it was not unfortunately, but it certainly could be and is for many others suffering with migraines.

Currently, I'm seeing my 7th Neurologist. She's a headache specialist and has me on the CGRP Monoclonal Antibodies, Namenda, Nadol, Frova, Zomig, and Phenergran and of course in my mouth guard at night. The Aimovig doesn't seem to be helping as effectively as it should after a year so we are switching to Emgality.  Which I'm hoping is just what I need. 

One important thing to note in my case is that my migraines, or at least most of them are triggered by my AAI/CCI, TMJ/TMD, Occipital Neuralgia, and nerve root compression. Therefore I don't respond as well as someone without those structural issues might.  So I hope my experience doesn't come across as negatively.  There are new advances all the time and so much hope in this area I personally believe. 


Blocks/injections:

 TRIGGER POINT INJECTIONS: NO
A trigger point injection is a procedure where a medication, usually a local anesthetic, is injected into the painful muscle to provide relief. The pain relief should be experienced not only in the affected muscle, but in the area of referred pain as well.






BOTOX:  YES

SPG block:  NO
Administration of lidocaine to the sphenopalatine ganglion acts as a ‘reset button’ for the brain’s migraine circuitry,” said Kenneth Mandato, MD, the study’s lead researcher and an interventional radiologist at Albany Medical Center. “When the initial numbing of the lidocaine wears off, the migraine trigger seems to no longer have the maximum effect that it once did. Some patients have reported immediate relief and are making fewer trips to the hospital for emergency headache medicine.”


SURGERY: YES but short lived
4 lead neurostimulator: 

The Dr implants a small device at the base of the skull with leads connected to a power source(pulse generator) that sends electrical impulses to the nerves. The gentle vibrations provide relief to the nerves. The pulse generator is often implanted under the collarbone but can also be implanted in the  abdominal, lower back & buttock area. 

image of neurostimulator








My first neurostimulator surgery



My occipital leads incision
Power source implant first surgery


Front supraorbital lead right side incision

my rock
Power source moved to chest with revision


incision for right supraorbital lead

where my leads are bundled


How my face looked while I had stim on.  

 OTHER:

-TMJ/TMD therapies including custom mouthpiece & vapo-coolant spray and stretch treatments.  SOME


MYOFASCIAL RELEASE: NO




At home therapy with the Thera Cane

-DHE infusion & injection:no
-Progesterone: some
-Estrogen: some
-Testosterone: some
-DHEA: no



As I mentioned before, when these migraines became chronic and then eventually daily, or so we thought, I had not yet been properly diagnosed with Craniocervical Instability, Atlantoaxial Instability, nerve root compression or Occipital Neuralgia.  Now we know that those underlying causes trigger most if not all of my migraines.  Had we known that we may have avoided many of these options, especially the surgery!  

I do not regret giving any of these things a try!  I do wish the neurostimulator would have worked the 2nd time around but I knew that lead migration was a risk going in to that surgery.  

Migraines are just a terrible beast that are devastatingly disabling. I assume that if you're reading this, you or someone you know suffers with them.  I do hope you are able to get the very best help and most effective treatment and are able to have the best quality of life possible.  It is encouraging to see the new advances and discoveries being made so often. Hopefully as more and more awareness is raised and more research is done this will only keep improving!  Until then hang in there, you are most definitely not alone! 











Tuesday, July 23, 2019

Traveling with chronic pain/illness & my 20 travel essentials





Last week we went to Six Flags & Hurricane Harbor in the 100 degree heat of the TX sun.   My son specifically asked for this for his birthday so I was bound and determined to make it happen.  The whole trip was a big production.   I was exhausted and hurting severely before we even left our house, not a good sign.






 In the back of my mind I was wondering if it was a good idea, but alas my tenacity kicked in.  And I want to share my experience since I know especially during these summer months a lot of us Mama's are faced with similar situations.   
For the 4 years before this & off and on for many before, I was confined mostly to my house making it to very few things, much less family fun things.  Holidays, birthdays, outings, church, events you name it I missed out on so many things.  Many times I cried about missing out on precious family memories or not being as big of a part as my heart longed to be.  But this trip turned all that around for me. I hope that by sharing it will encourage you as well. 

First of all I made sure to stock up on medications, all of them, the heavy hitters and everything in between including my supplements & oils.  I brought.it.all. Not only can the heat make me faint, fall, vomit, and increase my pain, but it also triggers migraines. Plus I can't physically walk well because of my balance issues. Thank you EDS, CCI, & AAI!!  So I researched park accommodations & discovered that for less than what I could rent a wheelchair at the park, I could rent a power scooter from a medical supply store here in my state, and no one had to wear themselves out pushing me(I can't push myself because of my weakened upper body strength and tendinitis in my forearms)!  I was all over it. I ordered a pack of cooling towels  a case of Smart Water, and bought this sweet misting fan that literally may have saved my life.  There are several other things I brought along which I've linked below with prices and where I bought them. 




 The first day we decided to go to Hurricane Harbor since there's water and I would presumably find a shady spot and be wet so what's the big deal, right? WRONG. So WRONG.  Somehow I forgot about the collar I wear 24 hours a day not being able to get it wet. So we looked into renting a cabana but it cost more than our hotel stay, hard pass.  We ended up renting a tiny little tent like apparatus that fit 2 chairs under neath...barely. I was excited as I plopped my bag down and went to try to find a comfortable resting position. Until 30 seconds later when I realized somehow the temp in this "shading tent" was at least 10 degrees hotter than actually sitting in the sun. I turned my little misting fan on and that puppy was like a dream, for a while anyway. I was still dripping sweat down my back and glistening all over in a very non attractive way.  My face looked like I dipped it in highlighter because of all the shine! But, I was there, so that was all that mattered.  I plugged my noise cancelling headphones in, turned on my Audible book and set out to just relax. It was enough of a distraction that I was okay to stay there for a bit.
I was just praying my hubby and kids wouldn't come back or at least my daughter who is scared of most slides, as the temp would surely increase 100 more degrees.  Also, I was hoping they were having so much fun they'd forget I wasn't there enjoying the slides with them. Plus, I knew if my son saw I was uncomfortable that he wouldn't enjoy himself but it would be impossible to hide at this point.  Thankfully they stayed gone a while and I was able to keep this routine up. I was about to take a sip of my water when that was hot like I'd microwaved it for tea when they returned with arms full of icees.  No thanks, hot water for me since I have sensitivities to sugar, flavoring and corn syrup.  The brief enjoyment was not worth the price I'd pay later.  I also forgot to bring a portable cooler....nice one! This story doesn't end well so I'll save you the dramatic ending and say that unless you have breeze, cold fluids, can get in the water, have the ability to ride a power scooter or wheelchair (if you have trouble walking),can re-wet your towel every 10 min or more, or if you have orthostatic intolerance, heat intolerance, and increased pain levels with heat/activity that I don't recommend an amusement park in the dead of summer (my tenacity is sometimes can be a huge weakness!)  This all probably seems pretty obvious but I was just naive enough to try it.

 I ended up passing out in the car for 2 hours with the AC on high, slamming cold water and still holding the fan on me because my body temp would.not.go.down. The heat exhaustion was real y'all!! I was pretty discouraged considering Six Flags was our destination the next day.




The next day however, was so much better that's why I share. Firstly, the park was big enough to accommodate my scooter, and I could use all of my gadgets from the day before AND find multiple open shaded areas. That made all the difference.  When I exert myself even by standing it takes a lot out of me and increases my pain.  I think that's another reason it hit me the hardest at Hurricane Harbor because I was not only overheated but either having to move to stay cool or walking.  With the scooter I had none of that nonsense.  I was also able to keep my water cold because I could bring more inside.  It did help that the park had multiple shaded areas, misters, and places to sit too. I really didn't even need my misting fan the whole time, and it was just as hot as the day before. That really stood out to me too because it encouraged me how much those changes and accommodations made a difference. 




 I of course wasn't able to ride any rides but I was THERE.  So, that was many answered prayers and meant the world to me and my family. We got there about 11 and all of us made it to 5 when my son was the one begging to go!! 

 The worst part of the whole day was when we stopped to eat lunch. I hate being the center of attention, but I'm used to getting a couple curious stares from people just being in the collar.  Well, that was magnified 100 times when we entered or I tried to enter the packed restaurant in my big 'ol power scooter.  My husband went to clear an area for me and I'm trying to communicate with him from across the restaurant that I'm just gonna park it outside.  He was not having it though.  I was literally at the table with the people next to the door, so so awkward for all.  I am holding up the keys assuring him it would be fine and he's waving in big motions for me to just come through. People were having to move to make room for me, my kids looking on in horror from the line to order.  It probably looked like we were arguing. Y'all it was up there with one of the most embarrassing experiences I've had! Not because of the scooter, I was grateful for that, but just the squeezing it into this tiny, full restaurant.  Too much, for me anyway.  I believe we'll bring our own food next when/if we go back for fall break. That little break though was a enough to cool us off, hydrate us all and get through the rest of the day where my son got to ride all he wanted to ride.  And I got to have some fun with my daughter who isn't a huge fan of rides.  





Steven and Jeremiah on a ride








I got to take all the pics some of us Mom's like to  take when their kids are on a ride, it was grand!  And I was so excited that it was him that actually begged to leave, not me! The best part was getting to be THERE.  GETTING TO BE THERE THE WHOLE DAY!!!!  It meant the world for real to all of us.  And I know this isn't possible for everyone but it just reminded me of all the progress we've made with my condition over the past year and that anything is possible. No matter what you are facing today, there is always, always hope.  So Getting to go on this 3 hour road trip both ways, 1 1/2 days of amusement parks and all of the family fun time we were all starved for, was more than a hundred answered prayers, it was a  dream come true.  Where so many times before I felt like a failure as a wife and mom, a burden and just a big let down. I left TX feeling like a victor.  CHALLENGE WON!!!! 








 I just wanted to share that because I remember how I was always looking for any glimmer of hope from others living with these challenges and I would hope to find someone with a similar story, and I did.  I'll never forget it, reading a  woman's story many years ago about her progress with the right treatments. It set my decision to persevere and continue searching for answers in motion.  So, today I'm hoping and praying that if you are reading this, & you're in a dark  season, that awful hopeless place where you're wondering what the point of it all is since you're not able to live your life the way you'd always envisioned it, that there is hope.  Our stories may be different but please just remember there is always hope, and that no matter what circumstance or situation you are in, you are loved and needed in this world by someone, just how you are, despite any and all limitations.  I hope you know that in the deepest part of your being and that you are encouraged by being reminded of how important & loved you are!


Here is a list of the products that are my travel essentials and a few I'm adding in for next time. I did not get paid by Amazon to suggest these products, I just have used and love them, but if you use the available links to purchase I may get a small percentage. 

1. HEADPHONES: https://amzn.to/2YedSgn

2. Mini fridge (to keep my headache hat, water or meds cool).  I found this more effective than a regular cooler with ice: https://amzn.to/2SDQ8Nl

3. PEPPERMINT OIL https://www.amazon.com/gp/product/B0062C2IKA/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=B0062C2IKA&linkCode=as2&tag=jennyhart-20&linkId=7d40f7025f2143447fd0f4efde255517

4. Sea Band: https://amzn.to/2Y16O7q

5. Cooling Towels: https://amzn.to/2LDp5Rz

6. Misting fan: https://amzn.to/2K2tBWw

7. Medication organizer: https://amzn.to/32HYk3T

8. Tranquility essential oil(because car rides make me anxious): https://amzn.to/2JNIflw

9. Headache hat: https://amzn.to/2K0pLx8

10. Sunglasses: https://amzn.to/30QgDSz

11,  Eye mask: https://amzn.to/2JZH1CD

12:  sweat pants: https://amzn.to/32NbcWj

13. weighted lap blanket: https://amzn.to/2LDQW4d

14. Emesis bags: https://amzn.to/30Su9oI

15. Bag hanger(use for purse and also trash): https://amzn.to/2XWqsl0

16. Orthopedic seat cushion: https://amzn.to/30YbtnL

17.  Essential oils travel diffuser: https://amzn.to/30NTsrW

18. Travel AC adapter: https://amzn.to/2Yfbce8

19. Ice/heat packs multi-sized: https://amzn.to/2Y19Ick

20.  Head relief essential oil blend: https://amzn.to/2YeJi1U